Parents, siblings of children with life-threatening conditions have higher rates of healthcare encounters

Being the parent or sibling of a child with a life-threatening condition can take a mental and physical toll on other family members. A new study from the Children’s Hospital of Philadelphia (CHOP) is one of the first to empirically measure the magnitude of this burden on families, with parents and siblings 50% to 70% more likely than their peers to receive health care for mental and receive physical health problems, accompanied by medication for these problems, than families with children without a life-threatening condition. The findings are published online in JAMA Network Open.

Previous qualitative studies have shown adverse side effects on the mental and physical well-being of parents and siblings of infants, children and adolescents diagnosed with a life-threatening condition (LTC). These studies have shown lower resilience, greater post-traumatic distress, greater emotional distress and a lower overall quality of life, with adverse effects on family life, marriages, social life, finances and education, among other aspects of their lives that can be affected by these conditions.

However, most studies have not been able to measure the exact impact that LTCs have on parents and siblings. Previous studies have been limited by small sample size, self-reported results, and limited to one condition, most commonly cancer. To address these limitations, CHOP researchers focused on four different types of LTCs, each of which is stressful for patients’ families: very preterm birth, critical congenital heart disease, cancer and major neurological disorders.

As clinicians caring for children with a variety of life-threatening conditions, members of our research group have long known, through testimony, that many of our patients’ parents and siblings are adversely affected by the stress imposed by the presence of a life-threatening condition in the family. We hope this study raises awareness of this largely unsolved problem and moves us toward effective answers.”

Chris Feudtner, MD, PhD, MPH, Senior Study Author, Director of Research for the Justin Michael Ingerman Center for Palliative Care and a core faculty member in the Center of Pediatric Clinical Effectiveness (CPCE) at CHOP

This retrospective study used commercial health insurance data from a single carrier to match families whose child is in long-term care with families whose child has not received long-term care based on the age of the children in the study. The study examined the frequency of healthcare encounters (ie, hospitalization, outpatient visit, telephone consultation), physical and mental health diagnoses, and subsequent medication prescriptions. In total, the study examined 6,909 cases and 18,619 control children and their families between August 2020 and March 2021.

The study found that mothers of a child with LTC were, on average, 61% more likely to receive medical treatment, diagnosis, and/or prescription. For fathers, the percentage was about 51%. Sisters and brothers had similar rates at 68% and 70%, respectively.

“Although limited to four specific life-threatening conditions, our study provides critical empirical data specifically measuring the negative impact of family members,” Feudtner said. “We hope this study provides the foundation for more work that provides critical interventions and support for families to stabilize their mental and physical well-being during an incredibly difficult time in their lives.”


Children’s Hospital of Philadelphia

Reference magazine:

Feudtner, C., et al. (2021) Association of children with life-threatening conditions and the mental and physical health of parents and siblings. JAMA network opened.

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